Why you should write letter to your troubles

Friday, September 25 is International Ataxia Awareness Day.

If you’ve been with me for a little while you know I have ataxia. A chronic, rare, degenerative neurological disorder of the nervous system.

It adversely affects balance, coordination, eyesight, speech.

Most people who visit write on fight on don’t have ataxia. And yet all who visit have troubles. Am I being judgmental or rude? No. Just honest. We all have troubles. And we’re all trying to figure out the best way to deal with our troubles. Some of us solve, some ignore, some blame others, and some just tip-toe from day to day feeling bad for ourselves.

The hard truth is–how we deal with our troubles determines how we define ourselves.

This blog is a place where I attempt to make peace with my troubles. And maybe it’s a place that helps you make peace with yours.

One strategy I recommend is writing an old-school letter to your trouble. Sounds weird. I know. But addressing your trouble and talking honesty to your trouble is a healthy practice. It’s an empowering practice. Let me demonstrate.

Dear Ataxia,

Fuck you.

Be unwell,

Jay

See, I feel better already.

Okay–despite its brevity, despite it’s biting truth–that letter comes from an ugly place in my heart. The cardiac land of jealousy and bitterness and angry faced emojis. Is this letter true? All seven words of it. Look, I know it’s not healthy to carry hate. Hate is a weight that pulls you down like an iPhone in a pocket of beltless jeans. So let me try again. This time with more tact and thoughtfulness and less profanity.

Dear Ataxia,

I’m writing this letter to you from my porch as the sun begins to set behind the trees. The leaves quietly catch fire and slants of sunlight shoot arrows across my evening lawn.

Before you entered my brain, some 7 years ago, my life was playing out like a cliched Hollywood script. I married my high school sweetheart, we had three kids, a house in the suburbs, and vacationed at the Jersey shore. It was unremarkably wonderful.

But then, as movies go, the script needed drama and tension to make it interesting, to sell tickets.

When you first arrived, your affect was minimal. A misstep here, a slur there. But lately you’ve been hitting the gym. I feel your strength. You pull at my tongue when I talk and you often punch me in my brain when I climb stairs or bend down to tie my shoes.

Why are you so angry? Is it because most people have never heard of you? Are you jealous of the popular diseases like cancer, MS, or Alzheimer’s?

Do you wish you had a spokesperson like Michael J. Fox or Wayne Brady to go on TV and talk about you?

Anyway, since we’re on this lifelong trip together– I need to be honest with you. I think about you all the time. More than my wife and kids. Man, I sound like I just stumbled off the set of Lifetime movie. But it’s true. You and your degenerative ways have wormed into every thought I have. Like an obsessive boyfriend, I lie in bed thinking how we’re going to spend the rest of our lives together.

You’re not easy to live with. You have hurt me. My pride, my masculinity, my thumping heart in irreconcilable ways. You embarrass me. You make me feel insecure and afraid and foolish.

Because of you I will never play basketball in the driveway with my children or go for a hike in the woods with them or swim in the ocean with them. You have stolen memories from me I didn’t even have the joy to hold.

And for that– I hate you. In fact, you make it easy to hate you.

Yet, as silly as this sounds– I need you.

I need you because no one understands me the way you do. Our connection strikes deeper than any MRI image can produce. Though you have taken so much from me– you continue to provide me with opportunities to brave up, discover my voice, and find deep joy and gratitude in life.

And for that–I can’t believe I’m saying this–thank you.

Yes, I wish things were different. Yes, I still yearn for that Hollywood script life. And yes, at times, you make me feel sorry for myself.

But not even you can make me feel a certain way. I choose how I feel about you.

You inspired me to finally make writing a priority. To write things I hope my kids will one day read. Things I’m embarrassed to say out loud or the things that someday (if you have your way) I won’t be able to physically say.

And if you had it your way I would degenerate quietly– like a good patient. Maybe a few years ago I would have. But time and age and your meanness ignited boldness in me. A defiance. A heart-on-the-sleeve spirit. You stoked my fire. You made me realize this is my life and–bad brain and all– I’m going to do something about it.

The autumn sky fades from soft blue to tender gold. The tree shadows stretch like black cats across the lawn. You’re here with me, always, but in this nook of time, peace joins me like an old friend. Unflinched by the silence between us. And someone, somewhere strikes a match and starts a fire. The smoke rises and the smell sails easy on the evening air and stills my heart and stirs my soul and I smile.

Be well,

Jay

_____________

Checkout my ataxia fundraising page, sponsored by the National Ataxia Foundation.Donations support ataxia research and the Philadelphia Ataxia Support Group.

______________

If you like this post, you may also like:

The Adventures of Clark Able and Me

~

(Im)perfect

~

It’s been a strange summer

~

Need some encouragement? Some perspective? This hardworking, almost-handsome, suburban soccer dad can help. Subscribe and, like a pizza, get my posts delivered to your door (your email inbox). No spam. Just posts.


~~

Jay Armstrong is a writer, blogger, speaker, and an award-winning high school English teacherDiagnosed with a rare neurological disease that resulted in a hole in his brain– Jay presses on. He hopes to help you find joy, peace, and meaning in life. For Jay, a good day consists of 5 things:

1. Reading
2. Writing 
3. Exercising
4. Hearing his children laugh
5. Hugging his wife
(Bonus points for a dinner with his parents and a beer with his friends)

This image has an empty alt attribute; its file name is IMG_3810.jpg

Leave comment

Your email address will not be published. Required fields are marked with *.